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#MEAction Network

@meactnet.bsky.social
5.9K followers 557 following 1.8K posts

A global network of people empowering one another to fight for equity for myalgic encephalomyelitis. Home of the #MillionsMissing linktr.ee/meactnet #pwME #MyalgicEncephalomyelitis #LongCovid #MECFS #ChronicIllness #DisabilityJustice

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#MEAction Network @meactnet.bsky.social · 18h
The 1st webinar in the ME/CFS Exchange Webinar Series is Thursday, Oct. 8 at 1 pm ET. It will focus on post-acute infection symptoms. Registration required: ow.ly/2ABp50ZOPKP Hosted by NIH NINDS in partnership with MECFSnet. #NIH #PwME #MECFS
MEAction shares that NIH announces ME/CFS Exchange webinar series starting October 8. Hosted by NINDS in partnership with MECFSnet. Text: Moderator and 4 speakers are listed.  October 8th at 1 to 3 pm ET. virtual.
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#MEAction Network @meactnet.bsky.social · 05/10/2026
We are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon!
Two free caregiving webinars on November 1 and 15 at 3 PM ET for National Family Caregivers Month. Dark brown background with cream accents. Text: November 1st 3 pm Et "Things We  Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with Kim Moy of Caregiver Wisdom. November 15 3 pm Et
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 02/10/2026
Our paper about the challenges and opportunities in decentralized clinical trials for #LongCOVID is out! We discuss the regulatory, clinical, & disease-specific challenges we faced in building a clinical trial network for Long COVID. Please read and share with your networks! 🧪
frontiersin.org
Frontiers | Facilitators and barriers to decentralized Long COVID platform clinical trials using repurposed drugs
Long COVID is an emerging chronic condition that results in substantial impairments in quality of life, physical function, and ability to maintain gainful em...
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#MEAction Network @meactnet.bsky.social · 02/10/2026
Please note the title of webinar and date are switched in the graphic. The dates and title are correct IN THE POST. (Doing too many things at one time- sorry!)
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#MEAction Network @meactnet.bsky.social · 02/10/2026
We are thrilled to bring you 2 new webinars from Denise Lopez- Majano & Kim Moy. "Things We Caregivers Wish We Had Known" w/ Denise on Nov. 1 at 3pm ET. “Being on the Same Team: Strengthening Relationships Through Chronic Illness” w/ Kim on Nov. 15 at 3 pm ET. Registration coming soon!
Two free caregiving webinars on November 1 and 15 at 3 PM ET for National Family Caregivers Month. Dark brown background with cream accents. Text: November 1st 3 om Et “Being on the Same Team: Strengthening Relationships Through Chronic Illness” with 
Kim Moy of Caregiver Wisdom. November 15 3 pm Et "Things We  Caregivers Wish We Had Known" roundtable discussion facilitated by Denise Lopez-Majano
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#MEAction Network @meactnet.bsky.social · 02/10/2026
We are delighted to bring you this new campaign at the request of our amazing caregiver volunteer Denise Lopez-Majano. Denise is turning 70 and wants to help spread kindness throughout our community - 70 acts of kindness by December 7th! DETAILS: ow.ly/1IPH50ZTE55 #pwMe #Caregiver
Bright yellow poster promoting '70 Acts of Kindness' campaign for Denise Lopez-Majano's 70th birthday with QR code to scan. Text: In honor of her 70th birthday, Denise Lopez-Majano is launching a campaign to encourage more kindness in our community and world in a very accessible way! #70by70
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#MEAction Network @meactnet.bsky.social · 01/10/2026
We're excited to bring you a new art workshop on Oct. 29 at 12 PM EST. We have a Halloween theme to celebrate spooky season! One of our wonderful volunteers & #pwME, Orion Romero, will host. ow.ly/2zFU50ZTl4T All you need is pencil, paper & way to join online! #art #spoonie #MECFS
Poster for Orion's Halloween Art Workshop on October 29 at 12 PM ET, held virtually. Spooky graphics like a spider web, bat, and eerie tree. #MEaction logo at the bottom.
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#MEAction Network @meactnet.bsky.social · 01/10/2026
MEAction’s Partner #Caregiver Support Call led by Kim Moy of Caregiver Wisdom is coming up Oct 4th at 12 pm PDT /8 pm BST. All caregivers welcome. To join, email kim@caregiverwisdom.net. Longtime community member & caregiver Charley Kakel will lead our conversation focusing on Micro-Acts of Joy.
Graphic of woman on a couch participating in a virtual caregiver support call with four diverse people on her laptop screen. Text at top: #MEAction Partner Caregiver Support Call. Text at bottom: First Sunday of every month at 12 pm PT/ # pm ET. Logos for MEAction and Caregiver Wisdom in bottom corners. "All caregivers welcome!" is on a banner in top left.
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#MEAction Network @meactnet.bsky.social · 30/09/2026
Dealing with Uncertainty and Chronic Illness -A Workshop with Marisa Renee Lee is now available to watch! youtu.be/gopHHk_4R4c We had a meaningful time coming together as a community. Huge thanks to Lee (author of Grief is Love and Waiting for Dawn) for leading this workshop. #pwME #pwLC
Portrait of Marisa Renee Lee smiling with information on her workshop video on managing uncertainty and chronic illness. Photo: Black woman with long hair wearing a deep purple top and smiling. On each side of that photo is a picture of one of her books: Waiting for Dawn and Grief is Love. Text above: Dealing with Uncertainty and Chronic Illness- A workshop with Marisa Renee lee. Video now available!
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#MEAction Network @meactnet.bsky.social · 29/09/2026
If you are interested and capable of sharing more about your MEdicaid story, we'd love to hear it at advocacy@meaction.net.
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#MEAction Network @meactnet.bsky.social · 29/09/2026
Hi there! MEAction is reaching out to every Medicaid agency in the states rolling out work requirements, which includes Missouri. Did you see the ways to take action at the bottom of the article? Feel free to reach out to advocacy@meaction.net. www.meaction.net/post/making-...
meaction.net
Making Progress for ME/CFS and Long COVID
State Medicaid leaders are listening. Here’s what we’ve won so far, and what comes next.
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#MEAction Network @meactnet.bsky.social · 29/09/2026
MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone! Your support helps important knowledge get in the right hands. Check us out at www.me-pedia.org! #pwME #MEpedia #MECFS
Gold badge showing 20K clicks from Google Search for me-pedia.org in the last 28 days.
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pumpkin @pumpkinstars.bsky.social · 29/09/2026
thank you to the advocates fighting g for all of us with #MECFS I am in california and will eventually need state support again. Your courage and strength to do these taxing things help us all 💛 thank you to everyone
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Amber Love (she/her) @amberunmasked.bsky.social · 28/09/2026
@mikiesherrill.bsky.social NJ needs to get on this. Since receiving mail that under the new "work rules" I would lose my coverage, I've been dreading being uninsured again. MC has been the only reason I have seen doctors, the dentist, and had tests illuminating an incurable disease not listed here.
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#MEAction Network @meactnet.bsky.social · 28/09/2026
Find ways to get involved at www.meaction.net/post/making-... * New to this campaign? MEAction is leading the #FrailAndFurious campaign to protect Medicaid access for people with ME/CFS, Long COVID, and other infection-associated chronic conditions (IACCs).
meaction.net
Making Progress for ME/CFS and Long COVID
State Medicaid leaders are listening. Here’s what we’ve won so far, and what comes next.
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#MEAction Network @meactnet.bsky.social · 28/09/2026
Advocates have participated in stakeholder meetings & webinars in 6 states, bringing the voices & needs of people with ME/CFS & Long COVID into the rooms where these decisions are being made. Our advocacy has opened new doors to advance recognition of ME/CFS + w/ state public health leadership.
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#MEAction Network @meactnet.bsky.social · 28/09/2026
We’ve also connected with state health officials in California, Wisconsin, and Colorado, while pursuing connections in Alaska and Nevada. Four advocates have shared their lived experiences directly with Medicaid leaders. Thank you, advocates! #PwME #medicaid #pwLC
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#MEAction Network @meactnet.bsky.social · 28/09/2026
Medicaid leaders in Pennsylvania & North Carolina have confirmed that ME/CFS, Long COVID, MCAS, POTS, & hEDS are on their lists of conditions that may qualify for the medical frailty exemption—PA has included ME/CFS as a Tier 1 condition, meaning an ME/CFS diagnosis alone can establish eligibility.
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#MEAction Network @meactnet.bsky.social · 28/09/2026
It is #MedicaidMonday and we are back with #FrailAndFurious campaign* updates. We have been busy and we want to make sure we share the wins along the way! Full details: www.meaction.net/post/making-... In the past weeks, MEAction advocates have been making real progress across the country.
Infographic showing ME/CFS and Long COVID medical frailty exemption progress in PA, NC, CA, WI, CO, Alaska, Nevada. White background with frail & Furious campaign and MEAction logos at top. Each update is listed in a text box. Outlines of states to the side.
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#MEAction Network @meactnet.bsky.social · 25/09/2026
"**PST Timings are adjusted for Summertime according to Pacific Standard Time. *GMT timings are adjusted for British Summer Time. Please check your local times in Spring and Autumn."
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#MEAction Network @meactnet.bsky.social · 25/09/2026
This one might be a good option for those in the UK- early pillows is Every Thursday at 2pm GMT. They explain GMT is adjusted for BST. pillowwriters.wordpress.com/2025/02/18/e...
pillowwriters.wordpress.com
Early Pillows Information
Welcome to Early Pillows. Inspired by the original Standard Pillows, but held earlier in the day to accommodate more time zones. Every Thursday at 2pm GMT over Zoom Pillow Writer Meetings are free …
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#MEAction Network @meactnet.bsky.social · 25/09/2026
October especially as the change from daylight savings is different depending on country. That is why BST ending is mentioned. After that it is more consistent. If you click on the information for each meeting, it might be clearer. pillowwriters.wordpress.com
pillowwriters.wordpress.com
Pillow Writers
An ME/CFS writing group
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#MEAction Network @meactnet.bsky.social · 25/09/2026
Have you checked out all the amazing things Pillow Writers has going on lately? So many options! pillowwriters.wordpress.com They are an international ME/CFS writing community, free and open to anyone with ME/CFS or Long Covid. We are honored to host this amazing group! #pwME #pwLC
Calendar listing October events for Pillow Writers with dates and times in GMT and PST, featuring sessions like Early Pillows, Standard Pillows, Pillow Crafters, WIMEL, and Softest Pillows. On cream background with fall leaves at the top.
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#MEAction Network @meactnet.bsky.social · 24/09/2026
"Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a shocking social crisis playing out behind closed doors...there has seldom been a stronger case for a public inquiry." @georgemonbiot.bsky.social discusses #MyalgicEncephalomyelitis.
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Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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#MEAction Network @meactnet.bsky.social · 24/09/2026
"We need to ask why so many patients have been abandoned, why discredited and dangerous treatments continue to be prescribed and why ignorance and neglect still dominate, in the health system and beyond. In other words, there has seldom been a stronger case for a public inquiry." #MECFS #pwME
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026
Find every talk here: bsky.app/profile/exce...
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026
I think I'm going to close 'er up, folks. See you tomorrow, either in person or from home! We'll see how I do. ❤️ Thanks for following along! I'll create headers for every major talk in one thread because a) people went very fast and b) NIH's internet was too slow to upload images quickly enough
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026
Talking about allodynia in murine models. Allodynia is when pain is produced by a non-painful stimulus. If you give LPS, hypersensitivity to pain occurs (Note: LPS is lipopolysaccharide, which is often used as an infectious proxy) Male mice showed increased allodynia-- but not female mice
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#MEAction Network @meactnet.bsky.social · 23/09/2026
Interesting before and after NASA lean test.
Slide: Dysautonomia & Parasympathetic/sympathetic balance. Capillaries seen with maestro microscope
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 23/09/2026
Continuing after lunch, we're on the #MECFS panel, along with #Lyme and #EBV. Alt text in reply. 🧪
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#MEAction Network @meactnet.bsky.social · 23/09/2026
The afternoon sessions begin with Illuminating the Invisible Infection-Associated Conditions. You might recognize some names for this one. Follow along with our Scientific Director, Jaime Seltzer. @exceedhergrasp1.bsky.social #MECFS #NEISvoid #MyalgicEncephalomyelitis #NIH
Slide from NIH conference with title and speakers. Illuminating the Invisible: Infection-Associated Conditions
Moderated by Joseph Breen, Ph.D., NIAID
Nancy Klimas, M.D., Nova Southeastern University
Judith James, MD., Ph.D., Oklahoma Medical Research
Foundation
Michal Caspi Tal, Ph.D., Massachusetts Institute of
Technology
Alba Azola, M.D., Johns Hopkins University School of
Medicine
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#MEAction Network @meactnet.bsky.social · 23/09/2026
Registration is now open for the RECOVER-TLC’s 3rd annual workshop on Nov. 4-5, 2026. Virtual & in person options: ow.ly/Jwrt50ZQIou "This two-day session includes keynote speakers, interactive panels, input from people with lived experience, and networking opportunities." #MECFS #pwLC
Save the date for RECOVER-TLC's third annual workshop on November 4 and 5, 2026, available in person and virtually. Registration is now open.
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#MEAction Network @meactnet.bsky.social · 23/09/2026
Scientific Director Jaime Seltzer @exceedhergrasp1.bsky.social reporting live (virtually) from the NIH From Mechanisms to Medicine conference. #pwME #MyalgicEncephalomyelitis #MECFS #LongCovid #ChronicIllness #NIH
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#MEAction Network @meactnet.bsky.social · 22/09/2026
Love the nickname! Also a fan of pumpkins and changing leaves!
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#MEAction Network @meactnet.bsky.social · 22/09/2026
Happy fall! Changing seasons can be tough when you have ME. Can you even notice the change? I have learned that anything I can find any joy in is good to amplify. What do you find joy in? Pumpkins? Leaves? Cooler temps? If this season is not one where you can find joy, sending you extra love!
Bright autumn leaves frame a clear blue sky with the text 'Hello Fall, Welcome cozy season!' and a heart symbol in the center.
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#MEAction Network @meactnet.bsky.social · 22/09/2026
The ME/CFS Exchange Webinar Series launches next month. 1st webinar in the quarterly series will focus on post-acute infection symptoms. October 8th from 1 pm to 3 pm ET via Zoom. Registration required: ow.ly/2ABp50ZOPKP Hosted by NINDS in partnership with MECFSnet. #NIH #PwME #MECFS
MEAction shares that NIH announces ME/CFS Exchange webinar series starting October 8. Hosted by NINDS in partnership with MECFSnet. Text: Moderator and 4 speakers are listed.  October 8th at 1 to 3 pm ET. virtual.
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#MEAction Network @meactnet.bsky.social · 21/09/2026
Self-attestation is allowed in most states for 2027, but will be much more limited starting in 2028. Please follow along and join in our #FrailAndFurious campaign! We are focusing on this critical issue all year.
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#MEAction Network @meactnet.bsky.social · 21/09/2026
MEAction advocates are talking with multiple states, urging them to put ME, Long COVID and other IACCs on their lists of conditions eligible for medical frailty exemption. We are also advocating that ME/CFS - which always impairs a person’s ability to work - be included in Tier 1.
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#MEAction Network @meactnet.bsky.social · 21/09/2026
We all know that state workers, disabled folks, medical providers, and caregivers have so much free time and ability to implement and answer to entirely new systems in a very short window of time. (SARCASM)
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#MEAction Network @meactnet.bsky.social · 21/09/2026
Tier 3: Cases that cannot be resolved through available data would proceed to individualized review and potentially documentation
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#MEAction Network @meactnet.bsky.social · 21/09/2026
Tier 1: Diagnoses which may independently establish both the presence of a condition and if the condition impairs an individual’s ability to work Tier 2: Diagnoses which may establish medical frailty when paired with supplemental information, such as utilization, pharmacy, medical equipment, etc
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#MEAction Network @meactnet.bsky.social · 21/09/2026
New guidance on tiers - issued on September 8th- leaves many unanswered questions. It is not a mandate. Each state can do things differently. State Health & Value Strategies summarized the tiers: shvs.org/resources/cm...
shvs.org
CMS Releases New Information on Operationalizing Medicaid Work Reporting Requirements’ Medical Frailty Exclusion - State Health and Value Strategies ~ Driving Innovation Across States
Introduction On September 8, the Centers for Medicare & Medicaid Services (CMS) released new information to states on the implementation of the medical frailty exclusion from the new Medicaid work […]
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#MEAction Network @meactnet.bsky.social · 21/09/2026
Exemptions for those w/ disabilities are COMPLICATED. The IFR requires states to assess whether an individual has a medical condition & whether that condition “significantly impairs” their ability to meet requirements. A diagnosis/condition alone may not be sufficient to establish medical frailty.
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#MEAction Network @meactnet.bsky.social · 21/09/2026
Let’s bring you up to speed! Congress passed huge Medicaid cuts including new work requirements. Work requirements are for those age 18 to 65 who are on Medicaid expansion plans and in some waiver programs. They require you to work, volunteer, or attend school 80 hours a month to stay on Medicaid.
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#MEAction Network @meactnet.bsky.social · 21/09/2026
Last #MedicaidMonday, we shared that CMS announced states may use a tier system to determine which Medicaid applicants qualify for the medical frailty exemption from new work requirements. Today, we are going to explain those tiers! #Medicaid #PwME #PwLC #disability #FrailAndFurious
Medicaid 3-tier model with criteria for medical frailty exemption. What may qualify people for the medical frailty exemption? Tier 1: Diagnosis alone, which a doctor has recorded in their records, may meet exemption requirements. Tier 2: Diagnosis with other supplemental information - from past claims and clinical records the state collects for you - may meet exemption requirements. Tier 3: Cases that can't be resolved through available data. Submitting additional documentation may be necessary
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#MEAction Network @meactnet.bsky.social · 21/09/2026
@icancmeresearch.bsky.social
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#MEAction Network @meactnet.bsky.social · 21/09/2026
Applications are open for the NextGen IACC Scholarship! Trainees create original research projects using a pre-existing chronic disease dataset in this funded, mentor-led research opportunity. MS, PhD, & MD/PhD trainees in a Canadian uni by the start of 2027 can apply: ow.ly/hUmO50ZOQk2
The #MEAction and ICanCME logos appear at the top, and another #MEAction logo appears in the lower-right corner. The upper-right portion of the flyer contains a photograph of four adults collaborating in a bright meeting room.

Text reads:

NEXTGEN IACC SCHOLARSHIP

DEVELOP AND LEAD AN ORIGINAL RESEARCH PROJECT USING THE SYMPTOM CLUSTER CHARACTERIZATION IN COMPLEX CHRONIC DISEASE (SC4D) DATASET: ~1.5 MILLION DATA POINTS FROM 2,200+ RESPONDENTS WITH ME & ME/CFS, LONG COVID, POTS, MCAS, HEDS AND HYPERMOBILITY DISORDERS.

Scholarship benefits:

• CA$15,000 to support 50% research time over one calendar year
• Protected access to dataset through the C-BIG platform
• Statistics, data stewardship, scientific writing, visualization, peer-review, and clinical and lived-experience translation training
• One-on-one mentorship sessions to address challenging questions
• Funding support for one peer-reviewed publication per trainee
• Opportunities to contribute to clinician- and patient-facing knowledge mobilization products

Fields of study:

MS, PhD, and MD/PhD trainees enrolled in the following degree programs at Canadian universities by the start of 2027 are especially encouraged to apply:

• Statistics and biostatistics
• Epidemiology
• Public health
• Medicine
• MD/PhD

Applicants from other fields are welcome if their training is a strong fit for the program.

Take the lead on original IACC research!
Applications open Sept 21, & close Nov 16, 2026

Apply at: www.meaction.net/scholars-program
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#MEAction Network @meactnet.bsky.social · 20/09/2026
We are honored to share an amazing poem sent in for our Severe ME Artists Project. We are featuring “In a Room I Lie (For Rachel)” by Adrian Bagley. Adrian, if I can tag you, let me know! All art: www.meaction.net/severe-me-artists-… Thanks to CoRy Wysz 💤 for the video.
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Anna Gifty @itsafronomics.blacksky.app · 20/09/2026
As I'm navigating recovery, I'm reminded of the incredible disability activist Tinu Abayeomi-Paul: "To be a Black disabled woman in America is to be unwillingly invisible in your greatest time of need." And truthfully, I think her words speak to Black women in pain more generally.
yesmagazine.org
What Black Disabled Women Want
The basic human rights of proper health care and opportunities through work should be available to everyone.
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